Teddy's Story

Chapter 17: A Shiny New Esophagus

It was reconnection day!  A day we had dreamed about and turned our lives upside down to make sure happened. We were so excited and could finally see a finish line off in the distance, but also knew the next few weeks of recovery would be one of the hardest parts. Honestly it seemed like reconnection day would never get there. It has been such a long road and required moving across the country, but our remarkable boy had beaten all the odds and there we were about to conquer one of his biggest hurdles.  

We spent the morning giving Teddy as many kisses as possible and talking to the surgeons about exactly what to expect. When it was time to head down for surgery, I started to panic again. Even with all the reassurance from the surgeons about what to expect, it was impossible not to worry. Since Teddy was already sedated and intubated, they took him straight from the NICU to the operating room. We were able to walk to the elevators with him and give him a kiss. I leaned over and told him I loved him and “no funny business was allowed.”  I told him I was proud of him and knew he was going to do great.  As they rolled him into the elevator a part of me was so excited about what the future would hold for him now and another part of me could barely breathe. As the doors closed, there we stood, watching them take our beautiful baby off to major surgery again. 

We headed down to the surgical waiting room, checked in, and started my surgery day routine. This time we were able to find seats at the very end of the windowed hallway, which became “our spot” for all the future surgeries we didn’t know at the time we would be having. That spot became so important to me, that even now, if we found ourselves back in Boston for surgery one day, I might have a full-on panic attack if that spot was not available. It is funny how things so small can become such important parts of getting through difficult times. We got our breakfast sandwiches and then settled in for another long day.  

We were expecting the surgery to take around 6 hours. We anxiously awaited each update from the surgeons and thankfully each report was that he was doing well. The six-hour mark come and went though, but they assured us that he was doing well.  Finally, as we closed in on 10 hours, he was done.  The surgeon came out to let us know how it went.  Overall, he really did great, as Teddy seems to always do. They were surprised at how much esophagus had grown, which thankfully allowed them to have a loose connection for the repair. This was great news, because when the surgeons have to put tension on the esophagus ends to reconnect it, it is more likely to cause the connection site to stricture (or get very tight), causing the need for frequent dilations to stretch it back out. So, they were very happy with his connection and felt it was going to be very successful.  

While overall the surgery went well, they did struggle due to Teddy’s anatomy, which was the reason it took so long. Since Teddy’s right side is smaller and more compact, it has caused all of his organs to be a little closer together. Like I mentioned during his first surgery they had to remove the thymus gland to make space for there even to be a route for the esophagus to go.  While they were reconnecting, they were much closer to his airways and heart than they would like to be. So, they had to go very slowly to ensure they were able to reconnect the esophagus without damaging other organs. This was mostly successful, but unfortunately his esophagus was pushing slightly on his right bronchus. They hoped it was so slight that it would not cause an issue and correct itself as he healed and grew, but only time would tell. 

All and all though, his Foker 2 reconnection surgery was a success! Our tiny little chicken nugget had a shiny new esophagus, and we were over the moon! When we finally got back to see him, we gently smothered him with kisses and told him how proud we were of him. Teddy actually having a connected esophagus seemed so far away in those first few days of life, but here we were, a day before Teddy turned 4 months old, having tackled the biggest hurdle he was facing, and everyone thought it went amazingly. We knew the next few weeks of recovery were going to be difficult. He would stay sedated another week, to ensure there was enough time for the esophagus to heal, and then they would start to wake him up and wean him off the medication. Everyone prepared us for this part, because it would be horrible, but we thought we were prepared and could finally see the light shining bright at the end of the tunnel. Or so we thought…

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